Advocate: Rare infection story raises awareness

A co-founder of the National Necrotizing Fasciitis Foundation said Thursday that she felt sorry for the young woman diagnosed with rare "flesh-eating" bacterial infection when she heard about her this week in media reports.

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"First thing I thought when I saw the news was, 'Oh, how tragic, another case!' " said Jacqueline Roemmele in a telephone interview about the first report of Aimee Copeland, a 24-year-old graduate student at West Georgia University who had lost a leg and was expected to lose her fingers to the infection.

Though there is uncertainty about just how common such infections are since no clearinghouse compiles statistics on their incidence, Dr. William Schaffner, chairman of the Department of Preventive Medicine at the Vanderbilt University Medical Center, estimates there are fewer than 250 cases every year in the United States. The reporting of such cases is not required by law.

"I get emails about these cases every single day," said Roemmele, who noted that news coverage of such cases is far rarer than the infections themselves are. "If you look at our foundation and our Facebook page, there's discussion constantly among thousands of people, but it just isn't sexy for the media."

Still, this week's TV and print pieces about Copeland did not surprise Roemmele. "It was a cute girl that everyone can relate to," she said.

In addition, Copeland's relatives have made themselves available to reporters and her classmates have been vocal in their support.

"Every three or four years or so it happens, where a case will take off in the media," said Roemmele, who is based in northern New Jersey.

But Roemmele said she was grateful for the coverage, whatever the motivation. Not only has her foundation received a "substantial" increase in donations since the cases went public, but the stories may have some educational value.

If people seek quicker treatment next time they get a cut that results in an rapidly spreading infection, causes pain disproportionate to the size of the cut and is associated with flulike symptoms, then the goals of her group will be furthered, she said.

Group A streptoccal bacteria, the same bacteria that cause strep throat, are the main culprits, though -- as occurred in Copeland's case -- other bacteria can also result in the disease, known to doctors as necrotizing fasciitis, she said.

"You're fine when you go to bed at night, but you wake up in the morning with your leg twice the size and turning black and you have a 105 or above fever," she said. "I've known many, many cases where people have died within 24 hours."

Roemmele herself survived the infection.

"Eighteen years ago, I had a surgery on my abdomen after a C-section for my twins," she said. "By the time they finally found out what was wrong with me, my flesh was falling off in the nurse's hands."

After recovering, she and a fellow survivor founded the website. In the 12 years since, tens of thousands of people have told their stories on the site about the disease, she said.

"I'm happy to see that it's again getting some attention," she said. "The biggest problem we have is missed diagnosis. That's huge. So, if somebody goes into the ER, invariably they're turned away. By the time they go back, they've reached the advanced stages of the disease and they're either losing limbs or losing their lives."

That comes close to describing what happened to Dan Coogan.

In 1995, the 41-year-old triathlete was gardening in his yard outside Dallas. As he set about transplanting a tree, he lifted its 2-inch trunk, which was attached to a 2-foot-wide root ball. "One of the roots poked me in my calf, and I didn't even know it," he said. "Within an hour, I felt like I had a Charlie horse. By the end of the day, I was vomiting all the time. I felt like I had the flu. I had a fever. I went to bed sicker than a dog."

A few hours later, at 4 a.m., his house was struck by lightning and caught fire. As firefighters arrived and extinguished it, "I could barely walk around because of the pain in my leg," he said.

He went back to bed, in worsening pain. "I just started popping a lot more painkillers."

At 10 a.m., with his cut growing fiery, he went to a small regional hospital in nearby Lewisville. "They checked me in and didn't do anything for two days" except administer antibiotics, he said.

By then, "this thing had taken over the backside of my leg and was more than halfway up my thigh."

His luck turned when a friend, who happened to be a surgeon, recognized that something was awry and arranged for his transfer to another hospital, where doctors immediately recognized the symptoms. "Within an hour of checking into that hospital, I was in surgery," he said.

Each night for nearly two weeks, he underwent operations that included removal of the infected tissue and dead flesh.

"They told me every night for nine nights that they were going to take my leg off," he said. But one of the doctors put it off, saying "I'm going to take a chance here," he recalled.

"She was right, thank goodness. I made it through all the surgeries and debridement (tissue removal) and living on morphine for 2½ weeks ... I was able to survive the whole thing and I walked out of the hospital."

But his case, like most of the others he had learned about, generated no interest from the news media.

"The people who get it aren't 24 and grad students," he said, referring to Copeland. "And she's got a community of other students ... The press has kinda glamorized this one."

Copyright 2012 by CNN NewSource. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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